General Information

What is mental retardation?

An individual is considered to have mental retardation based on the following three criteria: intellectual functioning level (IQ) is below 70-75; significant limitations exist in two or more adaptive skill areas; and the condition is present from childhood (defined as age 18 or less) (AAMR, 1992).

What are the adaptive skills essential for daily functioning?

Adaptive skill areas are those daily living skills needed to live, work and play in the community. They include communication, self-care, home living, social skills, leisure, health and safety, self-direction, functional academics (reading, writing, basic math), community use and work.

Adaptive skills are assessed in the person's typical environment across all aspects of an individual's life. A person with limits in intellectual functioning who does not have limits in adaptive skill areas may not be diagnosed as having mental retardation.

How many people are affected by mental retardation?

The Arc reviewed a number of prevalence studies in the early 1980s and concluded that 2.5 to 3 percent of the general population have mental retardation (The Arc, 1982).

Based on the 1990 census, an estimated 6.2 to 7.5 million people have mental retardation. Mental retardation is 10 times more common than cerebral palsy and 28 times more prevalent than neural tube defects such as spina bifida. It affects 25 times as many people as blindness (Batshaw, 1997).

Mental retardation cuts across the lines of racial, ethnic, educational, social and economic backgrounds. It can occur in any family. One out of ten American families is directly affected by mental retardation.

All:  "All" means "everybody," not just people without disabilities.

Assistive Technology:  Any type of device or service that can be used to increase, maintain, or improve the capability of persons with disabilities.

Brain Injury Waiver:  An approval to waive certain requirements in order to use Medicaid funds to assist people with traumatic brain injury.

Cash Assistance:  A grant from the state to use for different items or activities needed by the family.  It is not Medicaid matched.

CHEC (Child Health Evaluation and Care):  A preventative care program for children up to 21 years of age that tries to identify and treat health problems before they become disabling.

CHIP (Children's Health Insurance Program):  An insurance program for children 19 years of age and younger, whose family does not qualify for Medicaid but cannot afford health insurance.

Division of Services for People with Disabilities (Division):  A state agency within the Department of Human Services responsible for the administration of state and federal funding to provide services for eligible people with disabilities.

Disability: Mental retardation, autism, cerebral palsy or other developmental Disability, brain injury, or severe physical disability that qualifies a person to receive Division funding.

Early Intervention:  Programs and services for children with disabilities from birth to age 3.

Eligibility:  Determination of whether or not a person qualifies for Division services.

FACT:  Families, Agencies, Communities Together.  A committee in the local community that looks at issues surrounding the family.

Family-Centered Plan: A plan similar to a Person-Centered Plan to support families who have a child with a disability to live as much like other families as possible.

Family Council: A group of parents who work together to improve the quality of life for people with disabilities and to advise local Division offices.

Family Assistance and Supports/Family Support: Assistance provided to families so they can care for family members with disabilities at home.  The support includes, but is not limited to, respite care, cash assistance, in-home training, transportation, equipment, and therapeutic services.

Fiscal Agent/Intermediary:  A company that is hired to handle payroll duties for those who use the self-directed support model.

Guardian:  The person who is legally responsible for the care of another person (and/or his or her property).

Guardianship:  The legal process parents/families go through to become legally responsible for a person with disabilities who is 18 years of age or older.

Home and Community- Based Waiver:  An approval to waive certain requirements in order to use Medicaid funds for an array of home and community-based medical assistance services as an alternative to institutional care.

Host Home:  Specially trained individuals or families who care for a child or adult who may need out-of-home placement for a short or extended period of time.

Intermediate Care Facility for Persons with Mental Retardation (ICF/MR):  A 24-hour residential facility for persons with mental retardation. 

Individuals with Disabilities Education Act (IDEA):  A federal law requiring all children to have a free and appropriate public education. 

IEP:  Individual Education Plan that directs the services for a child with a disability in a school district.

Inclusion:  The process of enabling persons with disabilities to be educated, live, work and participate socially in the same environment as others who are not labeled disabled.  Inclusion is also used by educators to refer to the integration of children with disabilities into regular classes for part or all of the school day.

Independent Living:  A community living situation in which a person with disabilities lives alone or with others with the necessary supports from paid staff and natural supports.

Informed Consent:  A decision based on knowledge of advantages and disadvantages and implications of choosing a particular course of action.

Least Restrictive Environment:  The most integrated appropriate setting for a student with disabilities, so they can interact as much as possible with non-disabled peers.

Local Interagency Council:  Local agencies that work together to improve service delivery to children and youth at risk who are experiencing multiple problems and who receive services from more than one state agency.

Medicaid:  A federal program that pays for health care and long-term support expenses for people who meet eligibility requirements.  Benefits are paid with federal and matching state dollars.

Monthly Summary: A summary of daily notes required at the end of each month to be given to the support coordinator.  This is a Medicaid waiver requirement.

Natural Supports:  The family and people in the community who support the person with a disability (without payment).

Needs Assessment:  A tool used by the Division to prioritize the needs of individuals on the waiting list.

PASS Plan:  Plan to Achieve Self-Sufficiency,  allows a person receiving Social Security benefits to set aside money received to help achieve self-sufficiency without losing benefits.

Person-centered Plan:  A plan developed with and for a person with disabilities that describes the strengths, preferences, needs and the dreams of the individual and the supports and services required and desired.

Physical Disabilities Waiver:  An approval to waive certain requirements in order to use Medicaid funds for people with physical disabilities to help them maximize their independence in their choice of home, work, school, community and daily activities.

Progress Notes:  See “Monthly Summary”

Provider Companies/Provider Agencies:  Independent companies that contract with the Division to deliver supports and services to people with disabilities.

Rates:  The amount that the Division pays for each service/support for an individual to a provider company or individual.

Respite:  Temporary relief from the day-to-day care of a family member with a disability.

Self-Advocate:  A person with disabilities who advocates for their own supports.

Self-Determination:  The philosophy of developing and making your own choices and plans and directing some or all aspects of your life.

Self-/Family-Directed Supports:  Supports and services directed by the person/family receiving the service.

Support Coordinator:  An employee of the Division who works with individuals with disabilities and their families to develop service and support plans, based on the individual’s needs and wishes, and to coordinate and monitor the services and supports provided.

Support Strategies:  The detailed steps for accomplishing the outcomes of a Person-Centered or Family-Centered plan.

Supplemental Security Income (SSI):  A government assistance program based on the income and/or disability of the person.

Transition:  The process of moving from one environment or stage of life to another.  This often refers to a person with a disability leaving the school system and entering the adult world.

Waiting List:  A list of eligible individuals who have completed the application process for services but are not yet funded.  The list is prioritized according to the  Needs Assessment.

TERMINOLOGY

1.      Community Based Waiver Program

Utah’s Federally and State funded program for individuals with Mental Retardation who are not served in ICFs/MR.  Most waiver programs are run by private providers.  To participate, an individual must meet certain eligibility qualifications.  The Waiver program includes a variety of different options for individuals to choose to participate in:

A.     Independent residential living.

B.     Supervised residential apartment living.

C.     Supervised group home living.

D.     Supported employment.

E.      Day activity centers.

F.      Vocational workshops.

G.     Respite care options.

H.     And Etc.

 2.      ICF/MR

Intermediate Care Facility for the Mentally Retarded.  Most ICFs/MR in Utah are privately owned.  ICFs/MR are Federally and State funded.  The Federal funds come from Federal Title 19 money.  To get federal funds, ICFs/MR must pass a yearly Title 19 survey conducted by the State of Utah’s Health Department.

3.      USDC

Utah State Developmental Center.  The Utah State Developmental Center is the only state run ICF/MR in Utah.  It is located in American Fork and currently serves the needs of 230 individuals.

4.      Support Coordinator

A state funded position that assists individuals living in the State of Utah to participate in Community Waiver programs.

5.      DDMR

Developmentally disabled and mentally retarded.

6.      QMRP

Qualified Mental Retardation Professional.  QMRPs are professionals who work with individuals and help them set and reach yearly goals of their choice.

7.      DSPD

Division of Services for People with Disabilities.  DSPD is Utah’s organization assigned the task of assisting Utah’s DDMR population in meeting their needs.  DSPD oversees Utah’s ICFs/MR and Community based waiver program.

 8.      PCP

Person Centered Plan.  The PCP is the yearly plan which the individuals help develop to assist them in meeting their choice of long term and yearly goals.

 9.      MRAU

One of Utah’s organizations made up of parents, professionals, advocates, guardians, and friends.  It advocates for Utah’s DDMR population.

 10.  VOR

A national organization made up of parents, professionals, advocates, guardians and friends.  It advocates for individuals with DDMR who are living in the United States.

11.  MEDICAID & MEDICARE CARD

A federally funded program that provides federal money to DDMR individuals, especially in the area of medical needs.